Farewell, 2009, and Hello to MMX

2009 started and ended on a couple of tough notes for us. Charlie had started middle school, in a self-contained autism classroom, in September of 2008. Not a month passed before he was struggling and much of 2009 was about us trying to figure out how to help him hang on in his classroom. By the start of summer, it was clear that Charlie needed to be in a different school setting and Jim and I found ourselves back on the road to find him a school, and in the middle of a great deal of contention with how the school district had addressed Charlie’s “behaviors” (with the blue plastic headgear and a strong recommendation for “temporary residential placement“). Charlie started at the big autism center on November 16th and so far the “BAC” seems to be a good place for him, to the point that the past days of vacation have been grueling for Charlie.

For us? One day at a time, friends, one day at a time.

Because, though a miasma of “what are we going to do now about school for Charlie, about Charlie?” has been hanging over us since way before January 1, 2009, a couple other things happened.

For one thing, Jim and I started on the even more rocky (bouldery) road to being parents of an adolescent boy who entered puberty early and grew 7 inches over the course of a year and now wears size 11 shoes (same as his dad).

Super grand, grand thing: Jim’s book On the Irish Waterfront: The Crusader, the Movie, and the Soul of the Port was published in August. The book was ten years in the making which is to say, Jim’s researching and writing of it overlapped with the many years of Charlie’s diagnosis with autism and our constant efforts to teach him, to help him make his way in the world. I can’t tell you how many days Jim has shut down his computer and put away his files in order take Charlie on a bike ride or to take us on long drives or said he couldn’t make meetings because Charlie had a neurologist appointment. I am biased, but Jim’s one excellent father and his being able to write a book that’s been published to great critical and scholarly acclaim in the midst of always be there for me and Charlie says lots about love and devotion.

Something I still can’t believe: In March of 2009, I took a group of students to Greece. It was my first time ever there and certainly the first time I have been away from Charlie and Jim for so long and for such a distance. Huge kudos go to my mom and dad (aka PoPo and Gong Gong) for helping take care of Charlie. And call me completely out of my mind: I’m taking another group of college students to Greece in March of 2010, for a slightly longer trip and “we shall see.” Jim, good heart that he is, keeps assuring me that “all will be fine” and my mom and dad will be coming out again. At least the trip will give me time to stock up on worry beads, which have become Charlie’s near-constant sensory/self-calming item.

I’m going to sound like a bit of a crank, but, even as it’s important that more and more studies are done about the efficacy of Early Intervention, I’ve a growing, nagging sense that too much energy is not being focused on the areas of real and growing concern. Charlie continues to need a number of services “despite” all of that Early Intervention, and he is hardly the only getting-older-as-in-adolescence/teenagerhood/adulthood child on the spectrum who does.

We do think that Charlie starting his education so early has helped him tremendously. Even when he’s very, very upset (to the point of raging), that kernel of “compliance” is still there. He remains fond of school and of learning. On the other hand, some aspects of his earlier education are catching up to Charlie.

For instance, early on Charlie was taught to respond quickly to instructor’s requests, especially to verbalize or answer a question. One result is that he now often answers yes or no to queries before he’s really able to think through and process what he’s thinking and wanting. Also, for years and years we’ve made it our habit to reward Charlie’s every single word, every single utterance. But lately, we’ve found it necessary not to respond, or at least not to respond immediately, to everything Charlie says, and especially when he starts repeating a string of words or a question over and over: “Something to eat, something to eat, something to eat”; “Barney video, no no! Barney video!” Charlie does not have a lot of language and, this past year, it’s seemed more the case than ever that what he can say and what his mind is thinking, feeling, processing, are two very different entities.

With all this said, 2009 ended without too many fireworks for us. Charlie joyed in rides with his choice of CDs (this is an improvement; for awhile, he’d only listen to one CD for weeks) and walks in the snow (and it wasn’t too cold).

In the early afternoon, Charlie got into a bout of ritualistic playing involving DVDs and an old computer and I heard “Barney video” and then dishes, papers, and books went flying. Keeping in mind the new behavior plan for Charlie at the BAC, I directed him to sit in the white car; the behavior plan specifies that Charlie be directed to a “quiet area” where he can calm down and chill out. The car was such a place and Charlie sat in there (like I said, it was not too cold yesterday) for some 45 minutes. Jim had gone to have a quick bite to eat with a friend who’s visiting from out of town and Jim brought our friend over to say hi to (still in the car) Charlie. After they left, I carried out a few dishes, opened the car door, and looked at Charlie. He came in and, slowly but surely, picked up everything from the floor and, with me pointing, put it all away.

After dinner (pizza, Jim’s choice; nachos and a burrito, mine and Charlie’s—gotta celebrate!), Jim went to see his mother. Charlie was happy, grinny, settled into the DVD/old computer thing. Like many of his favored things to do, it is very ritualistic and we have certainly noted that when Charlie gets into an OCD kind of activity and frame of mind, this can often lead to “neurological storms” (like the one earlier yesterday). Trying to interrupt his routine/ritual as gently as I could, I showed him a portable DVD player, a present from my parents. (Though, ahem, somehow someone forgot to send the charger for the battery……) Charlie watched as I slid in a DVD. We watched a really painful (well, from my perspective) preview of kiddy Scooby Doo (now, would kiddy Fred have really worn that tie?) and then Wiggles In Space (o motherhood, what thou call’st on us to do) and then Charlie told me “all done.” I turned off the DVD player and put away the DVDs and quietly went elsewhere.

Five minutes later I heard Charlie putting his stuff away. Five minutes after that, he’d taken himself to bed and, without any melatonin, was asleep. And that, friends, is how 2009 came to end in our little corner of north central New Jersey, and how we ushered in MMX.

Wishing you a lovely, peaceful easy-feeling New Year and thanks, thanks, thanks for sticking with us. Hugs and potable items all around. We’ll be seeing you, from our spot on the autismfront to your’n.

Comments

happy new year as well. Thanks for all you do and for sharing a parents’ life with an autistic child. I can relate to everything you said about ending the year with some small fireworks courtesy of my little man and hoping the new year will bring us all health, happiness and more awareness to this ongoing topic. Cheers!

I hope that your group of 3 has an incredible year ahead. I appreciate all that you do for the autism community as a whole, as well as how much you do for me personally. One of the greatest discoveries for me since my kids’ diagnosis has been the wonderful people that I have met along the journey.
Here’s hoping for a peaceful and easy-feeling year ahead for all of us!

Wouldn’t you love to know what significance “Barney Video,” “”Farm Families,” “Alpha Bert” and some of his other frequently used phrases have for him?
One of my former students had two words: his name and the word “ear.” He rarely said his name but “ear” was in constant rotation, usually accompanied by tugging at his ear. The weird thing was the way he SAID “ear.” He spoke the word with a thick Brooklyn accent exactly like his father’s. It came out “ee-ah.”
He must have remembered his father teaching him the word and he always repeated it with the exact same inflection.
Does Charlie use the same intonation every time he says “white car” or “brown noodles?”

Wouldn’t you love to know what significance “Barney Video,” “”Farm Families,” “Alpha Bert” and some of his other frequently used phrases have for him?
One of my former students had two words: his name and the word “ear.” He rarely said his name but “ear” was in constant rotation, usually accompanied by tugging at his ear. The weird thing was the way he SAID “ear.” He spoke the word with a thick Brooklyn accent exactly like his father’s. It came out “ee-ah.”
He must have remembered his father teaching him the word and he always repeated it with the exact same inflection.
Does Charlie use the same intonation every time he says “white car” or “brown noodles?”

I like “MMX”. It sounds powerful, as in “Avatar, now showing in a theater near you in MMX!”, or “Hear all the sound in your albums when you listen to them on your new MMX receiver!”
I also think that, as we commonly refer to 1910 as “nineteen ten”, that we will also refer to this year as “twenty ten”.
Joe
(starting out the year agreeing with Harold-who knows what this year will bring?)

@Regina & Sarah & Jen & Monica, what can I say! Means so much to know you’re out there.
@Jill, I wrote more about Barney and Alphabert in the next post…..
I don’t think Charlie uses the same intonation for those words—I’ll listen closely when he says them and write back! That is really interesting what you noted about that other boy’s speech. it’s been noted that Charlie says some words (“match”) with a Minnesota accent, as his original team of ABA therapists were (with one exception) all from there or Wisconsin. I’ve thought that, because he heard them talking when he was first really starting to learn in a formalized setting, the accent (just for those words) has stuck.

@Regina & Sarah & Jen & Monica, what can I say! Means so much to know you’re out there.
@Jill, I wrote more about Barney and Alphabert in the next post…..
I don’t think Charlie uses the same intonation for those words—I’ll listen closely when he says them and write back! That is really interesting what you noted about that other boy’s speech. it’s been noted that Charlie says some words (“match”) with a Minnesota accent, as his original team of ABA therapists were (with one exception) all from there or Wisconsin. I’ve thought that, because he heard them talking when he was first really starting to learn in a formalized setting, the accent (just for those words) has stuck.